Thursday, March 3, 2016

Monday I received an email from Noah's CCB
notifying me that Noah now has a new caseworker and that implied that I had a
requested caseworker reassignment, with the words "I’m sorry that working
with Victoria did not work out for you and Noah." They would have
been better off to say something like they were rotating caseworkers, or just
doing a basic reassignment. To insinuate that there was a problem that I
wasn't aware or that I somehow was the reason for the change was a bit unprofessional. So now
Noah has a new caseworker and bless her heart they probably have painted me to
be a complete nightmare and she's losing sleep over managing Noah's case.
I have to laugh because I'm not sure really what else to do. So, Noah has
a new caseworker and who knows really why. He's on his third one now. And
I don't have the over excited warm and fuzzy feelings because it feels like
they're are all on the same "deny Noah" team.

Speaking of denials... I guess the State
decided they wouldn't stop with the PPod accessories. I had verbally
asked if they'd consider funding a dietitian who would prepare specialized food
for Noah. Again, I never had the chance to put in a formal OT request for it or
obtain a doctor's letter of medical neessity for it. And received a
denial under 10CCR 2505-10 8.503 That is a really broad 55 page set of published
guidelines and rules under the HCBS (CES) Waiver. Finding what they are
referencing will be a needle in a haystack under those guidelines. And
yet again, because I didn't formally request this in writing and they issued a
denial I don't have much of a leg to stand on in an appeal and they know it.
But that's fine if they want to change the rules and issue denials without
having any written request before them, then I'm no longer going to verbally
throw anything out there. I will make sure my communication is
limited and any request will be only in writing I will never verbally ask if
something "can" be asked for on Noah's behalf. As they say
there is more than one way to skin a cat and I'm not into playing these kinds
of games. Can you imagine what a big waste of time would be if each
caseworker was forced to issue a denial letter each time a parent asked if
their child's waiver "might" consider covering an item or service?
Or wait.. perhaps they're doing this to just me?
Family Voices assisted in the coordination of a meeting between us and the Department’s
Medicaid Director who oversees the Health Programs Office which administers
Medicaid and Child Health Plan Plus (CHP+) health program benefits,
delivery systems and provider relations and the Director of the Office of
Community Living. If you are like what does that mean? It's really
the top of the food chain so to speak within the State's Medicaid structure -
the Executive Team. Obviously, I had some reservations because my last
meeting with the State resulted in Noah receiving even more denials, and me
filing even more appeals. And you walk into these things knowing that the
very real possibility exists that you're either about to shoot your self in the
only remaining foot you had left, or you'll be able to effectively demonstrate
there is a problem and difficulties that require someone's interests and
attention. And you never really know when you become an advocate for your
child or the special needs community how the information will be absorbed and
digested and if it will spark anyone to implement change. When you take it to this level there is no
longer any way to keep your anonymity. But given that I've been speaking
with the press and news reporters, and publicly blog about all our difficulties
keeping your name on the down low isn't really realistic. I am remaining
optimistic until I have reason not to be. I am hopeful that I was able to
lay a foundation for wide trail of problems that I hope they didn't find any of
this the "norm" for parents who have children under the CES Waiver.
Although some things left me still concerned. The notation that the
appeals process is in some way beneficial or necessary to establish and clarify
cloudy rules. I'd like to believe that the State wouldn't purposely force
any family into appeals simply for clarifying their own rules. And even
if that were the case then there would be no need for them to file Exceptions
to Initial Decisions to override a Judge's ruling. And sure does the
State need "restructuring?" Absolutely. But that isn't a
simple fix. That takes legislation - if it even has a chance of passing,
I think the State prefers to be intentionally vague on interpretations of
written guidelines so that they have flexibility in how they chose to conduct
business.
I'd like to believe that things will take a turn for the better for Noah, but
I'm just not sure yet. I think only time will tell.
We did receive Noah's new Vitamix which I wasn't sure we'd see. And I'm
so relieved as Noah's first Vitamix from 2010 had finally had enough of
blending three times daily. It was emitting a bad smell and not blending
smoothly anymore and stalling periodically entirely. For the first time
in probably over six months Noah's food was the perfect consistency.
And I have been passing on Noah's equipment and devices that have grown too
small and seen a picture today of a little boy in California, Thomas, using
Noah's old things. And it gave me such a feeling of of peace and
happiness. There are days when I sit here trying to find the purpose for
it all - the meaning behind the struggle, my fierce drive to fight on for
justice and fairness for the medically underserved, and always at the heart of
it Noah who is the center of my universe. I dream of a world that makes
it so much easier for those with disabilities. I want society to care
about them more than they do. We live in world with such potential and a
host of possibilities. I just can't accept this is as good as it gets
for those with disabilities or for their families who love and fight for them
every day of their lives. We can do better than this.
I've been lifting and carrying Noah around a lot more lately. He just wants
to be a part of everything. Wants me to take him outside so he can be
with his little brother, wants me to carry him to watch TV in the master
bedroom, to lift him up to look into the refrigerator. To open the door
to after it rings so he an see that his incontinence supplies have arrived.
I am his legs, and considering our house is primarily carpet Noah doesn't have
adapted equipment that really works well or propels on carpet. He is
stranded without me. He knows it, and I know it. My back is sore,
and my right shoulder feels like it's on fire. It's been like that for
three days. I keep thinking it will get better. But so far no luck.
I rested for an hour today while Noah had pool therapy on a padded bench and it
felt so good, just to sit down, and take a mini time out. The heat of the
pool making me sleepy and content. And I knew Noah was safe with his
therapist in his special needs life jacket so I didn't feel like I had to be on
guard worried if his face would dunk in the water or if he'd be in any danger. Of
course lifting him back into his wheelchair after he had rinsed off in the
shower only reminded me that my relief was to be short lived.
Tomorrow is another day. And I can and will do this.
Love,

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Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Today, Noah has the diagnosis of hypoxic-ischemic encephalopathy resulting in spastic quadriplegia cerebral palsy with athetoid movements. Noah's miracle has brought our story to all of you.